I am new to this board, and was wondering if anyone could offer me some advice, and also answer some questions for me.

My mum is 77 years old, and about three years ago had a fall and broke her hip. When we visited her in hospital, she was confused for example saying that people had visited that hadn't, and not really responding to conversation properly etc etc. We put it down to shock at the time.

Since then, she has been declining and is physically unable to get around the house without the help of my dad who is approaching 80!

This last week, she got out of bed, and her other hip gave way, she is in hospital again. I have mentioned to my dad many a time that I think my mum should be assessed for dementia/alzheimers etc but my dad being my dad doesn't like to ask for outside help, and always feels he has to cope without asking for help.

Well when I visited my mum last she is talking about seeing her cat under her bed in the ward, mentioning that the woman in the bed opposite looks like dad, because she has grey hair?? asking if we can all stay the night in the hospital, telling us that she had had a day out today shopping, which obviously she hasn't.

My dad has just told me that the hospital have told him my mum has a 'touch of dementia' .

My first question is - what is the difference between dementia and alzheimers?

Also, how can you determine what stage someone is at?

I feel my mum has had dementia for some time, and I personaly feel she has more than just a touch of dementia.

I think many people on this board are enjoying their thanksgiving dinner as we speak, so I'll jump in and no doubt some others will be along later.

Alzheimer's is a kind of dementia (there are many different kinds, but Alzheimer's is the most common). It is often not possible to distinguish between the different kinds until very late in the disease, or after the person had died. For the most part differentiating between the different kinds is not something that affects treatment, although there are exceptions to that.

In my opinion there is no such thing as a 'touch' of dementia - either you have it or you don't. Perhaps the hospital staff were trying to be gentle with your father?

There is a sticky at the top of this board that describes the stages, that may be of help. There is also a test administered by a doctor or geriatric specialist called the mini-mental exam (MMSE) which is used as a diagnostic tool and gives an idea of the stage of the disease. Since your mother is already in hospital it may be simple to ask that she is evaluated by a specialist to give you a firm diagnosis? Getting that would enable you to make sure that any treatment options are considered, and would also be grounds for an evaluation of your parents' situation for any services that are available once your mother goes home again.

From what I understand in the UK your father, as a caregiver, is also entitled for an assessment on his own behalf. Things such as housekeeping, mobility aids, safety issues around the home - even to helping your mother with showering if necessary. From what you say, getting him to accept help will be the issue, but he is entitled to it, and the situation he is in will affect his stress and the state of his own health over time, so any extra help that he will accept is important .

I'm sure others will be along with more thoughts/advice. This is a great place to learn and get support in dealing with this disease.

From what I know I think your experience is fairly common - one spouse will either consciously or unconsciously compensate for the other, and it doesn't really come to light until a situation like this.

Just a late, breakng thought Brook - if your mother isn't normally prone to 'seeing things', it can sometimes be caused in older people by a urinary tract infection. You might want to check that the hospital has ruled that out.

Thanks so much for your reply. What you said pretty much confirmed what I had thought. For example my dad told me today that the hospital had told him my mum has a touch of dementia, as I previously had mentioned. When I asked him again this evening about this, he said they were his words to me, infact they had actually said to him that she has dementia, so he was basically thinking of my feelings.

Also what you said about it being difficult to get my dad to accept help - that sums him up, he never asks for help, never wants to accept help, and this is what is so frustrating for me, I worry so much about his health declining just as you mentioned. At the present time he is 79 and very active (just stopped rollerskating last year) 100 percent sound in his mind etc, and I do worry that because he doesn't want to inconvenience me or anyone else he will make himself ill. This obviously has a knock on effect on myself as now I have to worry about him also.

You mentioned about reading the sticky on the stages of this disease, well I read it and have realised that my mum is infact near the stage 6, although I am no doctor, but from what I can tell this stage seems likely.

My mums comes home tomorrow, and the hospital have notified social services (which I am glad of as my dad wouldn't of) and they are coming to access things at home. They are going to go through the different types of help available, and I have urged my dad to accept it.

My dad is one of those people who always put others first, but I wish he could see that he is important too, and I don't want him to suffer and go down hill with my mum. I know that sounds selfish, but I wish he could understand that my mum since being in hospital again, has declined moreso, and is going to soon become impossible for him to cope.

Brook I am glad to hear that the hospital did not tell your father that - I have to admit I had a bit of steam coming out of my ears when I thought they may have just mentioned it in a casual way and sent your parents on their way with no follow-up.

I do so love the image a 78 year-old rollerskating He sounds like a bit of a character!!!!!

I don't know if it is possible, but can you involve yourself in talking to the people who are carrying out the assessment? If you can't be there while it is happening, you can find out their contact details and arrange a separate meeting with them. I suggest this because I didn't find out until we were in a real pickle that a lot of services that had been originally offered to help my SIL had been turned down - both by my SIL and her brother. Had they been in place from the start it would have saved everybody a LOT of time and stress.

Thanks so much for your support. I feel that if you hadn't responded, than noone would of.

Yeah my dad is certainly a character, really young at heart, where my mum has always been the complete opposite.

The problem with my dad, is he always worrys about everyone before himself, he feels he needs to protect me from the worry, and gives out many white lies to me. The problem with this is that the reverse is happening it is making me really stressed, as I am worrying so much about him. If I ring him, he is getting a bit aggressive towards me, it is as if he thinks I trying to take over, interfere etc, reading from your post, I can see you are probably relating here. when I question him about getting outside help he says someone is coming tomorrow, I am thinking about going over, but I know my dad wouldn't appreciate it, to him that is like me treating him as a child, or someone who can't take control of his own problems. My dad is a very proud man, and he would never ask for help from me, his daughter.

So this is my biggest problem, my dad. The suggestion you made about seeing someone by myself is something I going to definetly do if I don't see any proof of help coming into the house.

I am sorry if I have already mentioned this, but my mum came home yesterday, went to visit, and noticed a carrier bag filled with medication. I went through it reading leaflets etc trying to work out what was for what? there were ten different medications! I went through the boxes and wrote on the outside of everyone, what was for what etc, it was overwhelming, my dad is going to be tied to the house, with not only round the clock care with physical needs, but also the constant administering of drugs.

The thing that worrys me is that this could go on for years and years, and she only came back yesterday.

The other thing that I am finding difficult is that I have never had a good relationship with my mother, whereas my dad is my best friend, so I have to deal with those conflicting emotions also.

Georgie, I will let you know if my dad actually acepts help tomorrow, ie domestic help (I offered this, although ofcourse he declined) someone coming to dress and wash her etc.

You might also have to warn your Dad that if he doesn't accept assistance, the entire situation can (and will) be taken out of his hands ....

and you DON'T want that happening ....

It only takes one ignorant outsider reporting something (real or not) and your Dad could lose ALL control over your Mum .. she could be placed in a nursing home Lord knows where (and Lord knows what type!!) AND charges can be laid upon him ...

Mum needs to be safe at all costs for her to continue living at home ... if she is at risk in any way, Dad run's the risk of a do-gooder wrecking everything.

Yeah Angel, this is something that crossed my mind yesterday when going through the medication!

I was thinking my dad is old at 79, he is not a medically trainned person, what if he gave the wrong pill at the wrong time? or wrong amount, or gets confused himself due to the overwhealming stress of it all?

You're right Brook, I can SO relate to a lot of this, which is why I have alarm bells going off over your father being so economical with the truth. I am afraid he is setting himself up for a fall.

Remember the people carrying out the assessment only have two sources of information - what your father tells them, and what they observe over the course of twenty minutes in the home. That's why it is so important that the views of immediate family and/or caregivers are also included (I think I kind of set a precedent for that where I am ). When I did get in touch with them they were very happy to work with me, and we got a lot of improvements very quickly. They are professionals who have been trained to do their work while allowing your father and mother respect and dignity, so they often can be very skilled in ways of 'forcing' help. But they are also beaurocrats, so things can fall between the cracks without pushing and prodding from people like you and me.

As far as the medication goes, there is something called a blister pack (or a Webster pack). If you talk to your parents' pharmacy they can organise this for you - I think it is a must have for all AD patients (actually, I'm not far off needing one myself with all the guff I'm taking lol!!). They take all the medication and organise it by week, day, and time of day so it is really easy to administer, and really hard to forget. (Actually, you might want to use this as a test to see how accurate the assessment is - this would be one of the first things that should be picked up).

Don't forget about taking care of you too - you have already mentioned stress. Get some kind of regular exercise or activity in place if you haven't already, to try and manage that side of it.

Let us know how it goes. This board has some of the most wonderful and supportive people on it that I have ever come across, and it has been a lifesaver for me for more years than I care to acknowledge!!!!

My dad just had a pacemaker put in about 1 mo. ago. He only spent 1 week in the hospital and my sis stayed the night, which was very smart. My niece was at their house the next night and then the next they were by theirselves and then I spent one night. But, I was there (at their house) for varying amounts of time for the 1st week home. And my mom was there almost the whole time.

In retrospect, my sister and I wish that he had gone straight to a nursing home, at least for a week or two. He was very "out of it", because of the meds they gave him in the hospital, hanging on for so long. Even my dad thinks that would have been better for him. But, not my mom.

So, let anyone in the health care field, especially the ones that her dr. sends, help you and your dad. You are going to need it more and more.

Take care and do all the research you can on NH and Alz places and how to pay for them and the paper work that needs started right now.

Oh what lovely kind people you are it is so nice to be able to come here for advice and support, thank you so much

Georgie, as you know my dad said that an assessment was going to take place yesterday. I went round there in the morning and he said that the social worker had just gone, bear in mind this was 8.30 am in the morning. I was a bit confused, it turned out it was just a homehelp to dress my mum. So I asked again about when someone was coming to do an assessment of needs, he then went on to say "sometime today" he didn't know what time, or the name of the person. Last night I rang to see how the meeting went, I asked him "how did it go"? to which he said "how did what go"? when I frustratingly explained he said "oh I got the wrong day, the letter just states that someone will be in touch".

The thing here is I don't know if my dad is being deliberately elusive, or whether he is starting to get confused himself. But I know for sure, if he doesn't ask for help, then I will have to step in.

The tablet pack idea sounds great, and I am going to enquire about that. When I went to my paretns yesterday, dad was rushing in and out of the kitchen ticking lists of which medication he had given, then preparing the next, then taking that one etc. It feels like a round the clock care home, so the tablet pack will definetely be a good idea.

Wannabe - thanks for your comments, it sounds like your mum is similar to my dad, when my mum came home I also would of liked her to of gone into a nh if only for the short while, but my dad seems to say "everythings fine", he can cope etc. He is just in big denial, and is making me cross, he is not thinking about me worrying about him, and as Georgie said he is setting himself up for a fall - and this is what is worrying me big time.

Although my mum is my mum, but for the sake of everyone, including my mum, I feel it would be better for her to go into a home, at least there she would be getting the proper care, and we could visit her there. My dad could still have her at home at weekends etc, but at least he would be able to take care of himself, and not be totally dedicated to my mum to the extent of not even being able to sleep properley. My point is my mum has NO quality of life, she has also lost most of her physical abilities. So now my dad also has NO quality of life.

I don't think it would be selfish to put my mum into a home, I know for a fact that if I had dementia, I wouldn't want my family to have to deal with such a demanding stressful, not to mention exhausing duties. I would want the right people to care for me, and obvioulsy still see my family, thats the best all round, isn't it?

I hope people don't think I am selfish for thinking this way, it is just that I don't want my dad to go down hill, he seems to not want anyone to worry about him, but everyone to put there focus on my mum, but my mum has gone, she should of been assessed a long time ago, but dad kept worrying about my mum 'knowing that someone was assessing her', so avoided it for a supposingly quite life.

Sorry this is so long, and thank you again for all of your helpful advice.

Yeah Brook, that is the hardest thing I am trying to get a handle on - is he just stressed/confused/proud, or is he in serious denial?

Either way, if your mother is as advanced as she sounds, he has been dealing with this for years and years and years already, so may not see the sudden need for changes?

I think it is perfectly reasonable to sit him down and say Look Dad, we have just found out that we are losing Mum, this disease is only going to get worse and she will need even more help than she does now. You cannot do it all, nor does anybody expect you to. If you get sick from trying to do too much then I'll be losing two parents, not one, so I'm going to be helping whether you think I need to or not.

I too, think a nursing home sounds like a good solution - especially since your mother cannot get around the house at all by the sound of it. That may well be the outcome of the assessment?

I would get a hold of the letter to get the contact details and call to say you would like a meeting after they have visited your parents - that way you will find out exactly what the outcome was, and have your own opportunity for input. It doesn't sound as though you are going to know otherwise?

I hope you don't think I'm being too pushy - I just wish I had done this years sooner in the situation I was in as it would have saved a lot of grief. Instead I was told that assessments were done and SIL was getting all the help she could - and that turned out to be a total load of rubbish.

There is a real issue of Carer Stress Syndrome which mimics dementia . that would include the denial, the confusion and lots of Dad's issues at the moment. This means HE is at risk too. When was his last check up? I would love to know what his blood pressure reading is ! LOL

It doesn't sound like Dad is coping very well. It sounds like he is on auto-pilot, and when something changes, it throws him out of whack (home care worker/social worker/letters) his routine is altered and he's not dealing with that very well.

I hate to say this, and I hope to God I am wrong, but Dad sounds in the early stages of the disease himself. I pray that it IS only Carer Stress Syndrome because THAT'S FIXABLE.

My ex-charges were proud people too, but in their quest to be independent, they actually became MORE dependent and it achieved absolutely nothing except to making 7 people miserable. Once they were placed in a home, the stress diminished and if anything, their quality of life was BETTER.

I hope you and your Dad find a solution FAST, because procrastinating just makes it harder.

I think it is perfectly reasonable to sit him down and say Look Dad, we have just found out that we are losing Mum, this disease is only going to get worse and she will need even more help than she does now. You cannot do it all, nor does anybody expect you to. If you get sick from trying to do too much then I'll be losing two parents, not one, so I'm going to be helping whether you think I need to or not.

Hi again

Georgie
With regards to the above suggestion you made, my dad is PROUD and stubborn, I can't talk to him on that level, he won't allow it. When I went round there yesterday, I asked if there was anything I could do, he said "no you sit down and have a rest!", he still thinks of me as his little girl, and can't get a grip of the fact that sometimes we have to turn to our kids for help. I guess in his mind the moment he asks ME for help, is the day he feels he is not coping with his life anymore.

What my dad can't see is that he is causing me much more stress this way, I feel like he is shutting me out. The comment you made Georgie about losing two parents summed up my frustration exactly, I feel like he is giving me no choice but to take a back seat, and like you said, setting himself up for a fall!

Regarding the letter, I took the liberty of ringing up the local services today, they have my mums name on record, and I managed to get hold of the care managers name who is hopefully due to do the assessment. Unfortunately she was off sick today, but I will be ringing back on Monday.

Georgie, I don't think you are being pushey at all, I can sense that you know where I am coming from, and your wisdom and advice are greatly appreciated.

Angel Bear,

Thanks for your comments. I personally think my dad is just a bit overwhelmed at the moment, mum only came home from hospital last Friday, so I am hoping the slight confusion is just the stress, and once things have settled a bit, that will subside.

Regarding the blood pressure comments, I will tell him to get himself checked out for that, as the very last thing I want is my dad to become ill with all of the stress.

Georgie, I read over some of your past posts, you seem to have been through it to say the least.

I have to ask, how is your husband?

Thanks again ladies, and will keep you updated regarding the call I will make to the care manager on Monday.

The experience I have had involved my DH taking full responsibility for his sister with AD. He was the only son in the family, and had it ingrained into him that he had duties above and beyond those of his sisters. There is another sister who, throughout this whole ordeal, has been in total denial and caused more problems than anything else (she has said that she can't understand WHY he should feel anything in this situation is a stress or burden on him)

I must say he has been wonderful - total love, total empathy, total accommodation of all her needs. I have helped however and wherever I can. This time last year he had a complete breakdown (TIA, extreme migraine - we just don't know despite all the tests). At one point he was sobbing in my arms saying that he just couldn't for one minute any more do this thing. That episode (at another point) also involved a total loss of ability to process language (asphasia) - he couldn't understand what was being said to him (I think) and when he responded he used random words that were totally inappropriate. It was terrifying.

ONLY that extreme episode made him let me take over full responsibility for looking after SIL. As I said earlier, only then did I find out that he had rejected/not followed up on lots of help that was available.

I don't know how much of this applies in your case. You are in a stronger position as you are immediate family. My DH 'soldiered on' with this to the point where it has had a permanent effect on him. And I worry that your Dad is doing the same thing. I thought I was doing everything I could to help, but with the benefit of hindsight, I should have contacted the health agency much sooner.

I guess, if I have any 'lesson learned' that may help you, it is that, if you are not going to have any success face-to-face with your father, it is absolutely OK to go through the back door and talk to the service providers about your concerns, both for your mother and your father.

love
Georgie

PS - there is something else I should say. Yes, I am a bit bitter and twisted about the years I spent offering and giving help and belatedly realising that my DH and SIL had rejected it from other sources (eg NO she didn't want meals on wheels but YES it was OK for me to take a meal around every day). Whether either of them was doing that rationally is still a question. But also, by the time I did get in touch with the agency things were so bad that they were able to implement what they call the 'caregiver burnout' package. From a totally cynical point of view, I feel that the agency was quite happy to burn out the prime caregiver from a resource perspective, before they got serious about help. That is NOT OK from my point of view.